Chronic Pain Bites
Every once in a while I take a "medication vacation". I don't quit taking anything that would endanger my well being or vital functions, but I discontinue my pain medicaiton and any other extraneous meds that might be messing with my metabolism. I wait it out as long as I can, and then start again.
This isn't the wisest choice. Tonight I found myself after approximately 36 hours without pain meds in a heap o' pain. I had some withdrawal symptoms the first day, which lets me know that I am physically dependent on the medicaiton. The pain, which I do not medicate to the level my physicians want me to, came back stronger and stronger and stronger the longer I was off the pain medication. I always have this bizarre hope that the meds will wear off and the pain will be magically gone. This is not based on any fact or any basis of reality.
The medication vacation helps me realize how much pain I am actually in, and why I take the medication I do. With chronic pain I think you loose perspective on how much pain you are experiencing. After all, what is the difference between excruciating and untolerable? It is a very fine line that gets very blurred. I fear I will think I am in pain just to continue getting pain medications, I fear that my pain might be imaginary, I hope it has disappeared and fear it has not. When I cannot discern how intense the pain is or how overwhelmed I am because of it I try to see what life is like without the medication. It also helps my gastroparesis and my digestive system perks up for a few hours, which is the best part of stopping pain meds.
I thought my pelvic pain has increased since the cathertization marathon began but I wasn't sure. I thought that my nausea has been getting worse but I wasn't sure. I thought that the neuropathy and leg cramping has increased but I wasn't sure. I am now.
Intense pain wears me out and I haven't been sleeping well the last week. I'm not sleeping well tonight either - why I am up writing this I guess. I caved at about 2 AM and took some medication and will put my pain medication patches on in a short while. Some medication was left in my system as 36 hours was not enough to clear everything out so at least that gave me a bit of a jump start from my own idiocy. I lasted longer than the previous medication vacation I took in October - only 24 hours that time.
I knew I had to start the meds back up again when I woke up from a short nap with tears running down my face on on my pillow, and I was clutching my stomach and (gasp) my pelvic region from the pain. It is hard to describe because you can't point to a certain spot and say - THAT is what is causing the pain. It is general and it is specific to certain nerve groups all at the same time. It is enternal and external.
The Headache is not liking me tonight. Seeing as The Legs and The Belly were already in revolt, not amazed The Headache decided to flare up too. It's not too bad, so hoping I can get everything controlled before The Headache gets too riled up.
I have work to do this weekend. I had not really planned on but that is what I get for taking two days off last week, two extra days this weekend. Not really complaining, just very hard to concentrate. Not sure if I should keep trying. It gets harder and harder to work a 40 hour week, and lately just 40 hour weeks have been few and far between. Even thought I have tried very hard to communicate what I am going through, I am sure people at work are thinking about all the deadlines we have to meet and what needs to get done - not realizing that if I am not well enough to drive, I am also hard pressed to sit or stand or do anything that requires concentration. I don't think I can do this job anymore. I want to keep going very badly (or is that very badly want to keep going?? I don't want to keep going if I have to do it BADLY!!)
ALL of my doctors have told me this fall to hang up my hat and go on disability. Easier said than done. Financially I don't know how I will be able to do it. I thought my new employers had long term disability only to find out in December that although they had paperwork we signed that said we had long term disability we were supposed to read between the lines and realize it was not offered. ARGH! Well, they probably would have had a preexisting clause in it like they do in their short term disability, so I would not have any coverage anyway. sigh. My health insurance is excellent, but if I go on Cobra (and we are big enough now they have to offer it) I don't know how I will be able to afford it. I also don't know how I will be able to afford pain medication without insurance. Another reason for the medication vacation - am I paying for something I really don't need?? Bigger sigh.
Going to drag out my fentanyl patches (I can't find my Tegaderm patches to put on top of them - where o where have they gone - two BOXES of them) and slap them on and try to sleep a little while. Then up and at work again. Ah well, at least its a diversion!!!
Wishing I had a Fast Car to Get Myself Outta Here...My body's too old for working....but I know Things will get better...
I too would think along the same lines of taking a meds break. Winny, I am so very sorry for what you have to endure each day. I pray for a complete healing for your body dear one.
ReplyDeleteYou sure are facing a awful lot right now. I am thinking and praying for you dear Winny.
ReplyDeleteI hope your medication vacation is over & that you'll get some relief. I admire your determination in going off the meds once in a while -- and I completely understand that thought that maybe one day all this pain will just go away...
ReplyDeleteYou take med breaks from the fentanyl patch? Do you not have horrible withdrawal symptoms? If I go 4 -5 hrs over the 72 hours, I am about ready to crawl the walls and have horrible stomach pain. I would love to take a medication vacation but to afraid to. I do admire you for being able to. You also mentioned some patches you put over the fentanyl patch? Can you tell me about that?
ReplyDeleteI too feel bad for all you have to deal with. I deal with a lot but you really have a lot. You are so in my prayers. I only wish good things to come your way.
God bless~
Debbie
JBR: Hoping you are OK!! Thank you for caring and the prayers!!
ReplyDeleteMigrainista: I am trying to adjust my attitude and be grateful for what functionality I have. I don't like being whiney!!!thank you for the prayers, I appreciate it!
Emily: Yep, I keep hoping but I know I'm not being realistic at the same time. Every time I go off the meds I know how stupid I am to do it. Medication can't cure stupid I guess!!! :)
Debbie: I just got chewed out by a nurse friend on going off fentanyl cold turkey - although I suspect there was still some in my body - I did not realize I put myself at risk of seizures from withdrawal. I think I will get an opinion from my PCP before I try it again, and due to the amount of pain, not sure if I will try it again. My gut has started working a little better tho - it does for a few weeks after. I use tegaderm patches over the top of my fentanyl patches esp since I wear 2 (1 12mcg/hr 125 mcg/hr) and they are small and don't like to stay on, the patches aren't very cheap but I don't have to worry about losing my pain patches because they didnt stick. It's sorta the same stuff the put over an IV site at a hospital. I buy mine at walgeens, http://www.walgreens.com/store/c/3m-nexcare-first-aid-tegaderm-transparent-dressing/ID=prod361001-product
thanks for the prayers! Divine intervention is welcomed here!
Just checking back on you dear one.
ReplyDeleteSure hope you are doing ok!! Let us know, please!!!
ReplyDeleteGod Bless~
Debbie
Sorry that you are still going through so much right now. I completely understand what you mean about disability. I have talked to several people with my condition that are on disability but I don't know how in the world our family would survive without my normal income. I also have been afraid quitting work would make me feel like I gave up. Hope you are feeling better.
ReplyDeleteTara, haven't been keeping. I certainly understand about the disability. With the average determination in my area at 18 months w/first appeal (and if you aren't on the list of disabling conditions like headache conditions AREN'T) then it is a BIG fight. And with HC its a rare condition so betting the ssn doctors' aint heard of it!!! Can't wait out 18 months without any financial resources. I also understand about the giving up thing. I don't want The Headache and all the other crap to WIN!!! Does that make me a winner or maybe a loser?? Haven't figure that out yet....
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